Heart of Beckett

UPDATE (8/28/17)
A few days ago (on the 26th), we hit our 4 year anniversary of when we finally got home from the hospital with Beckett “for good” after 8(ish) long months. For us personally, that is a date worth celebrating.
My, my…how we’ve come a long way. Not only are we celebrating a notable anniversary, we also have news for you. Since just a few months into Beckett’s life he has had a g-tube. This is a little “button” on his tummy that looks like a valve on an inflatable toy. This g-tube has allowed us to give Beckett both his tube feedings and his medicine. Since January 2017, Beckett’s doctor has been lessening the amount of feedings he gets each day and as of last Monday, Beckett is finally off all his tube feedings! This is HUGE! He now has to provide his entire caloric intake on his own without the help of his tube feedings. Though it has only been a few days, I am proud to say that he has been doing great! Not to get too graphic, but, when Beckett first started with his therapist (who is part of the family now), he would literally puke if you simply touched pudding to his lips. Now, years later along with hundreds of hours of therapy….he is eating on his own! To be frank, this was a very challenging part of our journey. He still has to prove he can gain weight on his own before they officially remove the button, in addition to learning how to take his meds orally. You see, I distinctly remember the doctors telling me that this would be one of our greatest struggles when we go home. And I can remember thinking (while not certain if I had another day with my son), “I long for those kind of struggles.” And though I still hold to that perspective (because those 8 months in the hospital were the darkest days of our lives), these past few years have not been easy. We have taken 2 steps forward and 1 step back in the progress of eating that this post seemed forever way. Yet, here we are…..potentially only a few months away from removing one of the last steps to this journey. It is hard to believe.
So, if you’ve been following us long….and even if you are just now joining the journey with us, we are at a very VERY significant milestone.
Stay tuned, but feel free to join us as we celebrate this hopeful journey of life and miraculous healing.
One day at a time…
#GoBeckett

#ODAAT

UPDATE (10/20/16)
Drum-Roll please……we’re home! Can you believe it? I hardly can, and in less than 2 weeks! I’ve literally dreamed of this day many times these past few years, and now we’re here. I joked when looking at Leah earlier and said, “…now what do we do?” lol I guess we just live life, right?! Ha.
Well, in all seriousness, the journey isn’t over just yet. We are on a new med regiment, we have to go have Beckett’s blood drawn twice a week to check some of his levels for the next 6 months, we will still have weekly speech therapy to continue to help him learn how to eat, we still have regular pediatric appointments, GI appointments, cardiology appointments, and appointments with our surgeon. With that said, we are obviously thrilled to be on this side of things. It’s really quite surreal.
Feel free to continue to follow Beckett’s journey on his website, or in our casual social posts of Rupp life. I’m sure we will be posting less again, but I must reemphasize how thankful we were/are for your encouragement these past few years. If you are even reading this, I’m referring to you.
And thank you God for your constant provision and patience as we navigated this unfamiliar territory. We didn’t always do it “right” but we found our strength in You.
My mom shared this verse with me earlier today, and it is quite fitting to bookend this chapter of our lives:

Psalm 63:7&8

Because you are my helper, I sing for joy in the shadow of your wings. I cling to you; your strong right hand holds (Beckett) securely.
Oh, lastly, here are the instructions for the “Take Them A Meal” if you are interested:

If you would like to sign up, you can access the meal schedule by visiting http://www.TakeThemAMeal.com and locating the schedule by recipient last name (Rupp) and password (3174739107). Thanks again!
#GoBeckett

#ODAAT